Today we had our first visit to neuro-rehabilitation. Was aprehensive about it because it makes the psp real now. Up untill today it was just a diognoses told to us by a neurologist something to explain away the odd symptom or three.
We have now been referd to about 6 other departments so things are now going to be busy going to see all these people. So pleased we will be getting hospital transport to get to all the appointments.
You are correct, now more professionals are involved I'm sure your calendar will soon be full. I'm so pleased you have hospital transport. Saves a lot of hassle trying to park. We are only a 15 minute walk from our hospital and at the beginning we did walk but it is down a very steep hill and once my husband needed a wheelchair, I couldn't push him. Once a group of people are involved, they may even put you in touch with even more agencies. Most are brilliant but I found some were less than helpful and very soon learnt to be more assertive when necessary.
I had a friend here for a morning last week and during her short stay I had 5 phone calls about my husband, his equipment, appointments, change of sitters etc. You will certainly get to meet a lot more people now. Just hope you don't get them mixed up like I do. Once I welcomed someone into the house and was talking to them for 10 minutes before I realised it wasn't who I thought it was. She had come to see Colin but was the occupational therapist not the speech therapist. She just let me ramble on before saying anything. Colin thought it extremely funny. Now I check the calendar several times a day and read the ID labels they all wear.
Best wishes.
Nanna B
GoadIm not the only one who gets mixed up , we see so many different people . . I did the same thing . I got upset at the first thinking I was losing the plot and then come to the compnclusion I am only human and under the circumstance do fine .
I did start to write the carers names down just to see how many different ones had come . I kept going and now so far have seen 87 different ones . without all the proffesionals we have seen . Surprising we even remember our own name isn't it .
I mention to the Go about having CHC but it doesn't look like we will get it yet . He only see the nurse for his blood tests or if he needs dressing for bottom , I see to these now myself and because of the is ok . We have to rely more on the nurse by the sound of things . Read in the per this week that in Wales the would be cutting back on CHC .!!!!! would be wouldn't they .
won't give up though
No, don't give up. The system is so unfair. My mum had Altzheimers for 15 years before she died so every time I do something stupid I think, Oh no..here it comes. When you have 3 short, dark haired women called Terry, Kelly and Kerry involved, what hope do I have?
Nanna B
exactly . When anyone new starts now , I give them a No it's become a joke . It's not really is it .
in the main most of the carers are very nice . I get on well with them , our call is an easy one for them because I still do so much for John . I know I shouldn't but he stresses so much about some of the private parts it makes him worse for the rest of the day . I can manage it myself so far . Only had one girl out of them all that I couldn't take to and that's not at all like me . I am not good with confrontations O am the one that hip gets the most upset in the end . The first time she came she was going to make such a difference and change things BLAH blah ! Then she came and gave me a lecture to what I shouldn't be doing , been doing it over get years , or even since we first married lol. At the same time was telling how she had to leave her parents incontinent and alone she had to work and her brother still lived with them , he was a surgeon !! .
I tried to let it go over my head but it did fester I suppose . Next one of the lovely carers knocked the door one night , they usually come straight in . Her partner had been sick all night and had called in to let them know they told her she had to keep going and wouldn't let her go home . I told the girl that I wouldn't let her in , Neither of us can afford to get any sickness bug . She . understood and agreed . I rang the on Call to explain . she was very blunt and said no one else would come and get on with it . or words to that effect . I was so annoyed And worried the girls would get into trouble . she had put the phone down but then got back to me to say someone would be ther in 1 and half hours .
Ten mins later two carers knocked the door . They ended up looking after me she really did upset me . They had only been around the corner and we were no trouble to fit in .
?the manager eventually rang to apologise but I told him I will never speak to her again and don't want her in our house . It was completely unnessessary .
Turned out I am not the only one she has upset .
What sitters do you have , we have one now from Crossroads . she sits for three hours a and is free.
A nice girl but thinks she has to entertain John and all we need is some Oene wo will make sure he starts comfortable not to warm or cold . Answer the phone keep the light out and keep an eye generally . He doesn't cope with conversation . He does miss intelligent conversation if you know what I mean , They come in with idle chatter as far as he is concerned . I don't mean that he thinks they are below him he doesn't at all and is very tolerant . I remember one day we had had the solicitor out to get some paperwork done power of attorney etc . When it was finished although he found it hard to cope with told him . I did enjoy talking to someone else with a good conversation I knew what he meant .
Can't afford to get the solicitor to sit with him , would cost the earth wouldn't it .lol
He asks me to stop talk ing very often .
Colin only says the occasional word now but when he could speak, he felt the same way as your husband about listening to chit chat. He used to be a good conversationalist and could talk to people from most walks of like ( although did feel intimidated by those with a " plum in their mouth"). He had one sitter for 3 hours every week who told him her life story ( several times) and would also stop and chat to me for ages after I had returned home. Colin solved the problem; he pretended to be asleep when she chatted on and as soon as I returned, he said he wanted to sit on the toilet. She has moved now so the problem resolved itself permanently. She was a volunteer from the Hospice but we now have two sitters from Crossroads, and as you said, it is free. I mentioned them at the local support group, which is not really local, and was told that in some areas, Crossroads charges. Everything is so inconsistent.
Nanna B
Nanna it sounds like we are on the same wavelength . the district nurse told me I am my worse enemy and I know I am . She agrees we should have it . . IMy neighbour works at a hospice and often knocks my door to ask how we are getting on . She keeps on about us approaching the hospice telling me we could go together I could stay over but they would look after John when wasn't there . or even not stay with him .
We are not without money but only own a very modest home with a pension we are not able to enjoy as much as we would like , or do so if were able .
Heaving been so long together and always done most things together it can be hard to think any other way can't it .
We have always been careful with our money but like most everybody would hate Ito see it get taken away from the family . We have one daughter who I would be lost with without she is my rock . one of my reasons to keep my spirits up .
I told the GP I do the work of Doctor Nurse ,cleaner , carer , hairdresser , physio most days , Secretary , Podiatrist , skin soecialist , and councillor . we all have very long CVs . On top of that it is progressive illness for which there is no cure . Just like they said at your hospice ..
They couldn't afford to pay us for what we do with love . While keeping thing in the house as normal as we possibly can .
Stop me now pleAse . I could go on and on once started .
When my mum went into a home she had a very bad stroke and it was completely impossible for me to help her on my own . I didn't know at the time what was out there to support us . I did learn a great deal at that time ., Broke my heart to see her not to be able to come home with us . John started to go down hill about the same time .
Soon after my husband's diagnosis I informed our church members via a church meeting. I was very upset when someone I had known for years approached me and said I should contact the hospice where she was a volunteer. Why would we need the Hospice? My husband wasn't dying, could still do everything for himself and I was still working full time, leaving him on his own at home. How things changed. I finally did contact the Hospice a year ago, 3 years after diagnosis. It was reading a post on this site that helped me change my mind. Hospices aren't just for those in the last few weeks of life as I thought. Colin has been going to the day centre from one week after my GP referred him. He had a 12 week break but they have taken him continually since the break. He has a treatment every week, massage of hands or feet and comes home smelling wonderful! He also goes to a meeting called the Gathering which is a Christian service, voluntary of course. He can't join in with the craft work but he strokes the visiting dogs and likes listening to entertainment. I have just found out our Ukulele group is playing to the Tuesday group next month. I am also regularly offered treatment and massages but I'm a bit peculiar and don't like being massaged. I now use my Fridays to catch up with friends or do things I can't do with my husband.
Whoops! I've gone on a bit as well. Anyway, think about what your neighbour said. When Colin was more able we had a 6 weeks course at the hospice which covered exercise, nutrition, relaxation etc. we also tasted lots of drinks that would be administered via a PEG when and if necessary. He is now waiting for that op. Another thing for us to think about.
Nanna B
Hi NannaB,
What stage was Colin at, when you got him into the hospice? Somebody has recommended that I try and get S on to a course. Saw GP yesterday, he was useless. Told me, Hospices were for people with Terminal Cancer, in whispers! I could have hit him! I think I have got him to refer S.
Lots of love
Heady
Hi Heady, I called in at the Hospice first as I didn't know how to get him referred. At that time he was still walking with a frame, could speak, was continent and slept less. They told me they would help anyone with a life limiting disease at whatever stage and look at the whole person, not just the medical condition. They also helped Colin think about what he wanted for the future. If we left it until he was terminal, he wouldn't have been able to make decisions, being unable to speak now. You could ring the Hospice and see what they say. They did come and assess Colin before taking him on so I don't see why the GP won't refer your husband as the Hospice make the final decision. I hope your GP sees sense. I heard from the Hospice within days so if you aren't sure if he has been referred don't let it drag on too long, ask the GP again.
Good luck.
Nanna B
Thanks for that NannaB. I did have to tell GP, that I knew someone with PSP, who had been to our local hospice twice! So hopefully he will refer S. I have a telephone appointment with the PSPA on Monday. She is going to tell me about all the help that is available. I will get her on the case. It might be a good excuse for her to ring our GP, to give him some much needed education about PSP. He certainly needs it. I always guessed he didn't know anything about this disease, not holding that against him, but he quite obviously has not bothered to read up about it! Thinks it like Parkinsons!!!! I know there are similarities, but that's as far as it goes! Totally fed up with him and the rest of the world. Got a lousy cough, that I cant shift! Looking forward to my glass of wine tonight, which will be served in a very large glass!!!
Lots of love
Heady
Hope all works out Heady. I'll cheers you both with a glass of Isla Negra Sauvignon Blanc from Chile at 9 pm. Whoops! Whilst writing this at my kitchen working surface, I smelt something burning. I've boiled the potatoes dry. Off to see what I can salvage.
Love scatty Nanna B x
A nice cold South African Chenin Blanc for me, while S, for the first time in a very long time, is unloading the dishwasher and doing something towards dinner, without me asking. Just like the old days! I want to cry, but that would ruin it. Something has picked him up, wish I knew what, so I can repeat it. Still I will enjoy it while I can.
Lots of love
Heady
If you find out what it is,let us all know. Long may it last.
Have a good evening both of you.
X
Well, half the dishwasher got unloaded and he chopped himself some onions, but couldn't work out how to use the hob to fry them! Still saved me a couple of minutes. Very precious!
Lots of love
Heady
Presumably he didn't fall onto the dishwasher door or smash your best crockery. Brought back memories. I always make sure all the cutlery was facing down into the basket now. Colin fell onto the door when the lower tray was pulled out and just missed all the knives and forks sticking up. A few more grey hairs that day. Last night I dreamt he was back to how he was and we had quite a conversation. I can't remember what he said but it was so nice hearing his voice. It's weird but I've forgotten what he sounded like but last night it all came back.
I hope you enjoyed the onions and whatever you had with them. Enjoy the rest of your Sunday.
Love
Nanna B x
S was/is a great one for videoing all our travels. We have hours and hours. It's what I watch, while ironing. He has always got an interesting commentary going. So I get to hear his voice in full flow. Thankfully, he still can speak, just a bit quieter now.
Lots of love
Heady
Unfortunately C hated recording his voice. Somewhere we have an old video of a party we held on our 25 th anniversary and his 50th birthday. I actually got him to make a speech. When I find it I'll get it put onto disc or whatever has been invented by then. I wasn't very good at labelling so will at some time spend hours going through loads of videos. That will be interesting.
X
When I applied for CHC on advice from the Hospice, my husband hadn't seen our GP for 18 months and had only seen the nurse for a flu jab. The hospice said I should apply as I wasn't getting any sleep and if I cracked up, he'd have to go into residential care. We had no carers or sitters at the time, just 5 hours a week at the Hospice day centre. They said I was giving him continual health care and it was too much to ask one person to do. He couldn't be left alone for his own safety. Are you in contact with a Hospice? I have found that out of everyone we've seen, they are the most helpful and as they are privately financed, they are not thinking how much CHC will cost the NHS.
Nanna B
CHC - Have you downloaded the forms yet? At least you could be thinking of what sort of questions you need to be prepared for.
At a recent local support group meeting, the Age Concern lady mentioned that they can help you fill in forms, and if they are with you in the beginning, they can also sit in with you on appeals. Another one to add to your ever-growing list.
Mo
I have a look at it , and will get in touch with Age concern . I have asked for a further assessment with a social worker we don't seem to keep the same one . Haven't heard anything yet . Did ring th surgery to ask if the GP would give me a ring he said to do so if needed a few days ago still not heard . The nurse said she is hoping to speak to the consultant once again no news . He is poorly himself .
thanks 4 your reply mo
i have the firsT CHC meeting coming up on Thursday of this week and need to be prepared for ti
the community matron has got it to this stage so i may well by lucky or have to reapply again or appeal
it makes sense to be coming here 2 assess em and to give the worst scenario possible i e falling 40 + time s daily when stressed; no appetite etc
lol jill
Hi Jzygirl,
Yes, life does start getting busy now. In one way it helps, as you, at last, feel as if you are doing something. On the other, it does drum in there in nothing anybody can do, so be prepared for that feeling!
I expect most people will not be needed yet, BUT don't just ignore them, like I did! Everyone told me to call them when I needed help, great, but nobody actually spelt out, what help they could provide. Pin them down and don't let them go, until you know exactly what each agency can offer you! Don't let anyone discharge you, because you don't need them yet. They are all very good at that, you will need to go through all the hoops again, when you do need their assistance.
Get the Physio on board and go to EVERYTHING they offer! Same with the speech therapist, you may feel that is not needed yet, but the sooner you start speech exercises the better. S is just starting to need help, but I feel it's too late, as he can't comprehend the strange exercises, a few months ago, he probably would have been able to.
Buy a big diary and start being very organised, learn quickly, if you are not that sort of person!!! Like NannaB says, you MUST be very assertive with some agencies. A lot, just like to tick the assessment box and the discharge box, so make sure you get the middle box ticked, where they actually have to do something! Not just referring you to another group of people!
Sorry, if I have made this sound negative, but I let too many people slip through, now I need them, I don't know where to go. My mother has got Alzheimers and so many agencies have been to see her and just keep referring other services, nobody is actually doing anything, so her and partner are going round and round in circles getting more and more confused!
Best of luck. Use that hospital transport as much as you can!
Lots of love
Heady
Glad you are getting the attention you need now. I hope you find people who know about the disease. If not, there are resource materials on CurePSP and PSPA (UK) that are designed for doctors and medical profession that give a great explanation of PSP. I gave them to a couple of nurses and to Hospice. Hospice actually shared the information at their weekly meeting. The more we can inform the easier it will be on those who follow with the disease. IMHO Jimbo
We are very lucky colchester hospital is very well informed about psp and the neuro-rehabilitation centre at the hospitol has got more psp patients on there client list. So it seems like we wont have to explain everything to everyone we see. Thankfull for small mercies. Janexx
does anyone know what is going on with davunetide
hi barbara
it has not ben approved for use ( 12 months ago or more) the report came out)
lol jill
hug sand xxx to you
He asked the question 
Definite diagnosis, at last.
